Every Day I’m Shufflin’: Making Time with Parkinson’s Disease (PATIENT STORY)

Susan Leister is a retired nurse who lives in Williston with her husband Scott and her faithful mutt, Shiloh. She has two daughters, Leah and Sarah, both in college, and enjoys sailing, horseback riding, biking, and laughing.

My name is Susan. I’m here to share some of my experiences with the thing that pushes me, haunts me, frustrates me, and challenges me, but which I do not allow to define me: Parkinson’s disease (PD).

I was diagnosed with Parkinson’s disease in 2000 when I was 36 years old. It was traumatic for me, but not so for most of my friends and family, as I was minimally affected at the time. My father-in-law understood the gravity of the diagnosis. He lost his father to PD at a time when there weren’t a lot of treatment options. He watched his father fade into a silent victim, unable to care for himself, or communicate effectively. Naturally, he was devastated by my news, and has, ever since, treated me as a miracle every time I see him. When I told him last year that I was planning a trip to Machu Picchu to go trekking, white water rafting, and ziplining (and generally asking my body to work for me!), he nearly flipped! But, this adventure I did – and the trip has forever changed me.

In my professional life, I was/am a registered nurse. I recently gave in to full disability, because…well…I’m disabled. You may ask: how could I trek the Inca Jungle Trail as a fully disabled person? Well, it’s because that’s what I chose to do with that time. You see, with PD, I have found I can do almost anything, I just have to make the time. The only thing my PD self REALLY can’t do is do anything very quickly. How do I get dressed in the morning? I make time. How do I get to a 6:00 a.m. appointment at the hospital? I plan ahead, and back track how much time and what medications I will need to take, or accommodations I will need to make to get there. If I don’t plan ahead, and don’t make the time, I can almost guarantee I’ll be late, which I often am.

Susan Leister in Machu Picchu. “Walking out into the ruins of Machu Picchu filled me with an indescribable sense of accomplishment.”

You see, I don’t like having PD, and I often get belligerent and stubborn, and try to act like I’m working with my pre-PD self. I don’t take the time to make the time, and consequently, inevitably, something will occur, usually FoG (Freezing of Gait, a common symptom of PD). I won’t be able to move in anywhere near the usual amount of time it would take someone else to walk through the house, looking for keys, or shoes, or my wallet, and then…I’m late. I have tools to manage this: an amazing medication called Apokyn, laser light dots on my floors that provide targets for my feet, a Deep Brain Stimulator I had placed in 2013, which was the beginning of the new beginning for my illness, and of course Dr. James Boyd, who is such a great communicator, not to mention a phenomenal practitioner. In a perfect world, it would all work. I, however, am not perfect.

So, I’m finally fully “disabled.” I stopped working my (very) part time schedule as a school nurse this winter because of what I learned from my trip to Peru! I want more! Reaching the end of our trek in the city of Aguas Calientes, and then walking out into the ruins of Machu Picchu filled me with an indescribable sense of accomplishment. The folks in our tour group were all able-bodied and less than 40 years old (except my mom who was 76!), but they were all inspired by what my mom and I were doing.

Since 2012, my worst year so far with PD, I have done a lot of rehab work and “prehab” work: the DBS implant procedures, operations, joint injections for pain, working out with my trainer and my physical therapist, Parkinson’s movement classes, doctors’ appointments, medication changes, good days, bad days, trying to get to work on time and to have my legs walking for me at work, more doctors’ appointments, and more….. So, this year I finally quit working (for money) and started getting some orthopedic “renovations”: a new knee and a repair of my foot which had been ravaged by dystonia during my “bad years” with PD. I’m better for now (!) and I’m going to enjoy it by taking care of myself! In preparation for my trip to Peru, I pushed myself physically to a point where I actually got better! Yes, it’s true, exercise is the answer. With PD, if you don’t move, you don’t move.

I’m off on more adventures! I hope you are, too!

Susan Leister is a retired nurse who lives in Williston with her husband Scott and her faithful mutt, Shiloh. She has two daughters, Leah and Sarah, both in college, and enjoys sailing, horseback riding, biking, and laughing.

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